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Hashitoxicosis:
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Hashitoxicosis seems to be a derivative of Hashimoto's
Thyroiditis AND Graves' Disease all wrapped into one nice little
aggravating package.
See some of my labs below. As you will see from the
reference ranges, I tested positive for Thyroid Stimulating
Immunoglobulin (TSI) which most people equate with Graves'
Disease AND Thyroid Peroxidase Antibodies (TPO Ab) AND
Thyroglobulin Antibodies (TG Ab) which most people equate with
Hashimoto's Thyroiditis. I guess you can say I have the
trifecta of immune disorders.
TSI, TPO AB AND TG
AB = HASHITOXICOSIS (IN MY OPINION)
TSI being present typically indicates Graves' Disease and TPO Ab
AND TG Ab usually indicates Hashimoto's Thyroiditis. When
you have all three in combination, you have Hashitoxicosis,
although I am yet to find a doctor that will actually use the
term Hashitoxicosis to describe my problem, or even acknowledge
the fact that Hashitoxicosis even exists for that matter.
This biggest thing that totally sucks about this is that the two
diseases are on opposite sides of the spectrum. Graves'
Disease typically makes you hyper and raises the levels of
hormones in your system and suppresses TSH and Hashi's makes you
Hypo most of the time with lower thyroid function and high TSH.
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When you have Hashitoxicosis and go for blood work, the two seem
to cancel each other out and everything seems fine to the doctor
so you get a nice piece of paper saying "Recommend patient seek
Psychiatric help." Too bad the doctor is not there with
you while your antibodies are raging back and forth and you feel
like total crap intra-day.
Check the labs above and you will notice my Free T3 and Free T4
are always in the "normal range" - almost perfect for that
matter other than my TSH being a little high. My TSH is
almost always high. Now try explaining to an
Endocrinologist that you feel like crap when he's looking at
labs that tell him everything is perfectly normal - they think
you're nuts and lose patience.
If
you read the labs above you will find that my TSH in the first
test is 14.8 which is pretty high. In the second test, a
few months later, my TSH was only 7.72. Those numbers are
WITHOUT any drugs or meds whatsoever. I can thank all
those lovely antibodies attacking my Thyroid each day for the
changes. TSH usually stays relatively stable over time in
healthy individuals. Mine is all over the place, which is
another symptom of Hashitoxicosis for most people.
SYMPTOMS:
Hashitoxicosis can present a huge variety of symptoms as your
body is being overrun by conflicting antibodies. On days
the Graves' TSI antibodies are very high, I get shaky and
jittery and feel really crummy. Sometimes I'll get
tingling and numbing in my legs and abs and a "buzzing feeling"
that feels like either a slight tremor or like I've been zapped
with a low powered stun gun but that feeling sticks around for a
few days and it makes your muscles really weak feeling when its
all over.
On
days the TPO and TG antibodies are really high I can expect to
be slow, sluggish, tired, puffy and a little dizzy.
Every once in a while when the moon aligns with the stars, I
believe BOTH sets of antibodies take a break and I feel almost
perfectly fine. Those few days are so refreshing.
Unfortunately it's usually short-lived. Mentally the
disease wears you out because its a constant up and down of
emotions. If I had to describe to something else I would
say it closely resembles some sort of quickly cycling bi-polar
disorder. You can literally feel fine one minute and be
sick to your stomach the next and then have your muscles tighten
up and tremor a half hour later. Its constantly changing
and that's the biggest problem - with me at least.
A PAIN IN THE
NECK! (LITERALLY)
When my hormones are raging and my TSI numbers are high, I get a
fair amount of swelling in my neck by my Thyroid area. I
notice most of the swelling at night time before bed but it can
also swell when I eat certain foods, like lunch meats or tuna
fish for some reason or any other time during the day typically
with stress or if I've been on the phone all day working.
By the end of a work day on the phone my voice is usually so
hoarse I can barely speak.
My
Thyroid swells considerably and it does so very quickly.
It goes from a soft, mushy gland to a hard little rock the size
of a ping pong ball. When my Thyroid swells up I get a
stabbing sort of pain. I describe it like someone jabbing
you in the neck just below the skin with a No. 2 pencil.
They keep jabbing and jabbing and then the thyroid deflates as
quickly and it swelled up and the tremors and fast heart rate
tends to subside - there is definitely a correlation in my
opinion between the swelling, the symptoms and the tremors.
If
you are a doctor reading this PLEASE acknowledge that
Hashitoxicosis exists and dust off your old medical books and
read up on it. We're not crazy - it's simple and as most
of you doctors say, it's all in the labs. When you have
Hashitoxicosis you FEEL EXACTLY like you would expect from your
labs - up and down and all the symptoms of BOTH Graves' AND
Hashi's.
HOW DO WE FIX IT?
I
am no doctor by any means and who the hell knows - I might have
some other funky disease I don't know about yet or may just be
plain crazy, but I am pretty sure all these problems are
associated with my Thyroid.
My
personal opinion is that if these type of symptoms present
themselves, save yourself from wasting 3 years of your life as I
have and have the damned Thyroid removed if you can. I've
been given the run around beyond comprehension and to this day
am still not fixed and STILL have this totally broken Thyroid in
my neck. Who the hell needs it at this point? My
Thyroid could have been removed 2 years ago and I would be
totally fine by now. Instead I find myself waiting to
start life some time in the future after my Thyroid finally dies
off on it's own, which could take several years.
The problem with Hashitoxicosis is that you're damned if you do
and damned if you don't. Standard doctor protocol will
probably land you a prescription for Synthroid or some other
Thyroid replacement hormone at some point in your diagnosis.
The problem with taking Synthroid when you have Hashitoxicosis
is that although it may help those hypo periods when the Hashi's
antibodies are high, but wait until you toggle back to the
Graves' portion of the disease and your TSI helps your thyroid
pump out lots of hormone, now you have lots of NATURAL hormone
in addition to the extra replacement hormone pills you are
taking and you go totally hyper and hyper is no fun at all.
I
just don't understand why doctors can't seem understand these
things. They seem to think every patient is an idiot and
cannot possibly research this stuff on their own. They
roll their eyes at you when you tell them you "read this off the
Internet". They are still the doctor and make the final
call regardless of what you do or say. Why can't they at
least entertain the notion that this is a legitimate disease and
you might be one of the few people that has it? I just
don't understand why they prefer to make people suffer when a
ridiculous 1 hour surgery to remove the broken gland can change
your life forever.
I
cannot wait until the day when my Thyroid is finally removed or
it dies off on its own and I will post here my progress. I
would be willing to bet that after a successful Thyroid surgery,
everything would be fine and all of my symptoms would go away.
I guess I will never know until this thing is out for good.
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